What to Expect from Your MS Therapy

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Everyone living with MS has different expectations of their treatment. Some may expect disease-modifying drugs to be an actual cure and become disappointed when MS continues to affect their lives. Others may be living with treatable symptoms because they don't realize newer treatments could help or because they've surrendered to a lower quality of life.

What are your expectations? Are they unrealistic or outdated? If you think you could use a reality check, tune in to hear experts discuss realistic expectations for MS therapies and share strategies you can use to meet those expectations.

Announcer:
Welcome to this HealthTalk multiple sclerosis show, What to Expect from Your MS Therapy. These shows are produced by HealthTalk and supported through an educational grant from Biogen Idec and Elan Pharmaceuticals. We thank Biogen Idec and Elan Pharmaceuticals for their commitment to patient education.

HealthTalk provides resources for people living with multiple sclerosis, but this information is not a substitute for medical care. Please see your doctor for medical advice most appropriate for you.

Our panelists this is evening report that they have received prior funding from the sponsor of our program, Biogen Idec. The opinions expressed on this program are solely the views of our guests. They are not necessarily the views of HealthTalk, our sponsor or any outside organization. As always, please consult your own physician for the medical advice most appropriate for you.

Now here's your host, Trevis Gleason.

Trevis L. Gleason:Well, hello and welcome to HealthTalk. So you've been diagnosed with multiple sclerosis. They did the MRI, the lumbar puncture and possibly the evoked potential test. You've made the adjustments to your life that MS has required of you, and you've chosen a drug therapy regimen. Well, now your disease may be progressing. You may find new symptoms that you didn't have before. You may be experiencing what's called breakthrough disease. There are new drug therapies on the market and some that are coming soon. What should you do?

Joining me to help sort through these issues and answer these and other questions about what to expect from our drugs and other therapies are two specialists in the field of MS. First, we have Dr. Ralph Benedict, a professor at the State University of New York at Buffalo in neurology, who practices in the Jacobs Neurological Institute.

Also joining us from Pittsburgh, Pennsylvania, where he's a professor of neurology and director of the MS Center at the University of Pittsburgh Medical Center, is Dr. Rock Heyman.

So first, let's start with a history of the MS drugs. MS platform therapy drugs have been on the market now for nearly two decades, and we were all told to get on one and stay on one as soon as we could after our diagnosis. So without being too rudimentary, what should we reasonably expect from the ABCR (Avonex, Betaseron, Copaxone, Rebif) drugs?

Dr. Rock A. Heyman:As most people realize, these medicines don't cure or take away multiple sclerosis, these medicines help control multiple sclerosis. How do you know if you're helping control MS? You should be having fewer exacerbations or attacks than you had before. Disability progression should be minimal or very little. One of the main goals of going on the therapy is trying to prevent that from getting worse. Many neurologists and patients like to see on their MRI scan no new lesions showing up, or at least not as many new spots, new inflammation or brain atrophy. You want to know what your neurologist thinks success will be, and you yourself want to say, “Well, this is what I expect out of the medicine,” and make sure that is appropriate for what you're going to be looking at six months, one year and two years down the road.

Trevis:People who are newly diagnosed with MS and trying to decide on these drug therapies don't know what they're supposed to expect out of the drug. So it really is up to the doctor to help them understand that it's not going to necessarily make them better.

Dr. Heyman:
Yes. These medicines are to help keep the disease from getting worse. I think there is quite a bit of potential in the human brain and nervous system and whole body to do better. If one stops having attacks or lesions, the potential is there – with exercise, symptomatic management and maybe other healthy lifestyle choices – to do better. But these medicines don't take away that foot drop or that blurry vision.

These medicines were designed to help control the underlying disease process. They're not designed to make new nerve connections or to regrow or repair myelin. They're designed to stop the ongoing attacks that can be kind of microscopic, chronic little stuff or the bigger things that we recognize as true exacerbations.

Trevis:
Do any of the platform drugs show better success than others for a particular MS symptom?

Dr. Heyman:
Not for relieving a particular symptom. There are patients who notice that their fatigue may be worse with one drug or another. And by and large, the interferons can have the side effect of fatigue. But I have patients who note their energy is better, so everyone is quite individual. These medicines weren't designed to take away spasticity or take away weakness or improve balance. There's a different category of medicines that we call symptomatic therapies that may be used for the spasms and the fatigue. There are things we try for tremor. There are certainly things we need to try when mood or cognition is an issue.

Trevis:
Dr. Heyman, how often do you think we should expect to have an MRI? And is this the only way to tell if the disease is progressing?

Dr. Heyman:
Well, certainly MRI is not the only way. I like to have MRI because there are many times lesions can be silent, and silent lesions do matter. And there are people who, for instance, have MS but can't have an MRI because of an implantable device. Because of insurance issues, they may not be able to get them as often as they want. And neurologists can have a pretty good impression of how things are going from a standard exam.

I time my patients and time how fast they walk. If somebody with MS happens to be an athlete, they can keep track of times and say,”Doctor, I'm concerned. Last year, I could do this, and this year my numbers are this way.” Together you and your doctor can problem solve. If you don't exercise, your balance gets worse, your strength gets worse.

Trevis:
That brings me to a personal issue, and I know a lot of other people deal with this. The doctor is not the one who's wholly responsible for a person's health. A doctor is taking notes and keeping track of your health clinically. We should be doing the same. Keeping a daily log or a weekly journal of how we feel every morning is an important part. We have to be an active member of the healthcare team.

Dr. Heyman:
Yes. Most certainly, it's a team. Your doctor is a consultant who has a lot of expertise and a lot of training in knowing how to help with things. But the primary responsibility for getting your medicine into your system and keeping track of things is with the patient. Taking an active role is an important aspect of getting good care.

Trevis:
How do we know if our current drug therapy is working for us?

Dr. Heyman:
Sometimes it's obvious. When somebody has been on the medicine for a year, two years, three years, and they're doing as well or better than before, that's obvious. It's looking very good. I still may want an MRI to check.

Other times, unfortunately, it's obvious too because somebody comes in and they're doing visibly worse. It's pretty easy for them to know. People can say there's quite a difference.

That grey zone is the tough part because the medicines don't stop all attacks. They don't stop new lesions. The medicine is not working well if it's making your life miserable. That's another aspect of it too. Too often people just kind of get in the rut because they're doing the best they can for themselves and their family. But sometimes it's quality of life that's gone down.

Trevis:Dr. Benedict, MS affects all aspects of a person's health, and that includes their mental health, from depression to cognition and even to intimacy issues. As a neuropsychologist, you assist MS patients with these mental health issues. What are some of the most common issues that you've come across?

Dr. Ralph H. B. Benedict:By far, the most common neuropsychiatric or neuropsychological problem that MS patients encounter is depression. We can talk about two kinds of depression that are frequently seen in MS. The one that you hear about most commonly is major depressive disorder. This is a condition where a patient will feel extremely sad nearly every day or every day. They will experience a lack of capacity to have pleasure. Oftentimes, they feel suicidal, and they have an inability to sleep or reduction in their appetite. It's very common for patients with major depression to think pessimistically or negatively about themselves or to feel guilty frequently. This is major depression. The frequency of major depression is high in MS, higher than in many other neurological diseases.

Many patients do not have major depression, but they have what we call subsyndromal depression (also called minor depression), which has some of the major depressive disorder symptoms but not all of them. Most commonly, this presents as sadness, persistent worry and negative thoughts about oneself.

The lifetime prevalence of depression in MS is about 90 percent. So if you're an MS patient and you don't have any problems with depression over your life span, you are certainly an outlier.

Less frequently encountered is cognitive impairment. I would say approximately 60 percent of MS patients have cognitive impairment during the course of their illness. Oftentimes, the cognitive impairment can be pretty mild and may not even significantly impact their activities of daily living or their quality of life, but for some patients it can become quite severe. In a study that we recently published, we found that about 10 or 15 percent of MS patients meet diagnostic criteria for dementia due to a mental condition. The things to look for early in the course of MS cognitive impairment are a slowness of processing speed, problems doing two things mentally at the same time – we call this working memory – and the lack of capacity to learn new information.

Trevis:
You mentioned depression, and you're speaking of things like fatigue and cognitive difficulties. Those issues could be caused by the depression that has been caused by MS as much as they can be caused by the MS directly. Is that correct?

Dr. Benedict:
That's absolutely correct. Oftentimes, the task of the behavioral neurologist or the neuropsychologist is to try to treat that part because there are treatment implications depending upon what the answer is. Usually, the cognitive impairment associated with depression is very mild and sometimes isn't even detectable with objective neuropsychological testing.

Fatigue, interestingly enough, is not very strongly correlated with the results of neuropsychological testing. Fatigue is subjectively very unpleasant for the patient, but, surprisingly, in a controlled environment they often can do more or perform better than they think they can, even though it's very draining and unpleasant for them to do so.

Trevis:
One of the issues with MS patients has to do with memory problems. Does this have to do directly with MS, a lesion in the myelin on the axons, or is this a white matter or a grey matter part of the disease?

Dr. Benedict:
It used to be thought that the disease of the white matter was the primary culprit. Let me give you a 45 second neuroanatomy lesson. The front part of the brain has neurons in it that communicate with a part of the brain that's deeper and in the middle of the brain. That is our frontal lobe telling our memory circuit what's important to learn or to remember. In the middle of the brain, there are new neuroconnections going out to the back of the brain laying down the actual memory.

That's a lot of distance to cover, so the cells in the front part of the brain need a long axon fiber track to communicate with one another. And if you have a lesion or a plaque in the white matter interfering with that communication, then, obviously, that brain is going to have a hard time learning new information. But over time when the plaque continues to attack particular areas of the brain, some of the neurons themselves die. Our recent research shows that it's not the plaque formation that's most important, but it's the extent to which that degeneration has taken place. If those cells start to die off, the patient starts to have very significant memory problems.

Trevis:
How can we tell if a memory problem is really MS related and it's not just normal aging?

Dr. Benedict:
There are three levels to address that. The first is to talk to people that know you well, and don't rely on your own judgment. The psychological and neuropsychological literature clearly shows that what caregivers and informants observe about us is much more reliable than what we're thinking about ourselves. So the first thing to do is talk to your spouse, your parent or your friends and ask them if they've observed any changes in you.

Better yet, talk to your physician or your neurologist because they have even more objectivity to their observations. They may not see you as often, but they know the signs to look for in what you're reporting to them.

If you really want to be certain, the best last step is to see a neuropsychologist where objective tests can be administered that will measure your ability to actually learn new information, much like an IQ test. You can get an IQ of memory or an IQ of processing speed, and we can determine with a fair degree of certainty whether or not this is disease related.

Trevis:What should we expect from our MS therapies?

Dr. Benedict:Well, we have a long way to go but we're starting to make some headway. We're better at treating depression than the cognitive problems. There are two ways to treat depression. One is with medication. The most effective family of medications for depression are the SSRIs (selective serotonin reuptake inhibitors), and many neurologists can treat depression related to MS, and psychiatrists are very good at it.

Psychologists can apply a treatment called cognitive behavior therapy. This is a talking therapy, but it's very different than what you might traditionally think about psychotherapy. It's not just talking about your problems and getting your worries off your shoulders. You're learning information about how your mind works and ways to manipulate how you think about your problems so that you can change brain chemistry to cure depression.

The literature shows quite clearly that both of those treatments are equally effective and that MS patients with depression fare best when they take both treatments simultaneously. Although cognitive behavioral therapy is very effective, many patients don't have access to that kind of treatment. It's also time-consuming. Most patients opt for just medical therapy, but I have seen patients do extremely well with the cognitive behavior therapy.

When we come to cognition, we have fewer options because there's really no behavioral treatment that's been shown to be effective for that. I would urge your audience to beware of claims from some companies, advertisements on the Internet and so forth, about cognitive retraining, cognitive rehabilitation and things like that. You cannot retrain your brain by doing some memory games on a computer. However, in the hands of a skilled speech therapist or occupational therapist, you can learn how to compensate for your memory problems or attention problems. And I know that in our clinic we've been able to keep a number of MS patients in the workforce much longer by simply teaching them techniques of how to cope with their cognitive deficits.

Trevis:Now Tysabri (natalizumab) is on the market, and there are other drugs that are following quickly. How do they differ from other MS therapies, in a nutshell?

Dr. Heyman:First of all, with Tysabri the route of administration is different. This is a medicine that one would have to go to an office or hospital to have. One gets the medicine through an IV over an hour and has to be watched for an hour to make sure there are no allergic or other reactions.

But the way this drug works is different than the interferons or the glatiramer [Medical editor’s note: Four therapies are approved for the treatment of relapsing-remitting MS. They include interferon beta 1-a (Avonex, Rebif), interferon beta 1-b (Betaseron) and glatiramer acetate (Copaxone)].

Tysabri is felt to function by blocking the white blood cells from grabbing onto the blood vessel wall. If they're moving through a blood vessel and can't get hold of the wall, they can't go through the wall and into the brain and cause damage.

The drug works in a very specific receptor on these lymphocytes. When it was given in the studies, we had very good effects, with two thirds cutting down the attack or exacerbation rate. Even quality of life was improved in people taking this medicine.

Trevis:And how much of that might have been placebo effect?

Dr. Heyman:Well, that's why we have placebo controlled studies. People were getting an infusion, and even I could not tell which patient was getting the medicine and which patient was getting sugar water. Patients were blinded. Doctors were blinded. So we think we got rid of the placebo effect by doing the study well. And that's what we want. We're happy in the real world to have a placebo effect. When I tell my patients something is going to work they believe it's going to work better. But we want to know that it's much more than a placebo effect. And this is was a very solid study. [Medical editor’s note: In the study referred to by Dr. Heyman, 67 percent of patients receiving Tysabri remained relapse-free at two years as compared to 41 percent of patients receiving placebo. In other words, of the people who received no treatment for two years, 4/10 had no relapses but of the people who received Tysabri, nearly 7/10 had no relapses. This shows that nearly twice as many patients on Tysabri remained relapse-free. But it also shows that even without treatment, 4/10 patients did not relapse over the same two-year period.]

Trevis:Dr. Heyman, I read almost daily in the blog that I write here at HealthTalk, that people are expecting to get better; to recover function that they've lost for months or even years when they go on Tysabri. Where are they getting these ideas? Has Tysabri ever been proven to reverse disease damage?

Dr. Heyman:Tysabri has not been shown to remove lesions, to repair or regrow myelin, or to in some way get nerve cells to reconnect or change. When they looked at some measures of function, one of those being the nine hole peg test – the measure of dexterity that a neurologist or occupational therapist may use in the office – people did indeed have faster times at the end of the study.

These were probably very active patients. And if you stop having attacks and you are living an active lifestyle, doing rehabilitation and managing your symptoms, the potential is that people can do better if their disease is under good control.

Trevis:
So people who are going on to this drug therapy shouldn't expect a reversal of the disease. It's just to stop it from going forward. However, they could expect some quality-of-life improvements.

Dr. Heyman:
Yes. When somebody's has had very active disease over the course of six months or a year, I may see some improvement in function with if they stop having attacks. The people who haven't had as much active disease may still be appropriate candidates. However, it's unusual to see that kind of a change in them.

Trevis:
Is Tysabri comparable to the cost of those other ABCR drugs?

Dr. Heyman:
Avonex, Betaseron and Copaxone are all fairly similar in price. The Rebif is higher, and then the Tysabri is higher than that. So expense wise these are all very expensive medicines, and Tysabri is one of the more expensive ones because it requires a doctor's office to give it and is given intravenously, for some of my patients their insurance coverage is better for it. The price is another variable that may have to enter into the decision making for some people.

Trevis:
Why it is that there are no generic forms of MS drugs yet?

Dr. Heyman:
There's no generic form of these biologic agents because the FDA (Food and Drug Administration) handles the patent and licensing for these drugs differently than they would handle a straightforward chemical, like a statin drug [for cholesterol reduction] or a high blood pressure drug. These drugs (the biologics) are made by living cells. They're more difficult to make. The issue is at what point should the patent be expiring? How long should they last? [Medical editor’s note: One of the other issues here has to do with how the FDA would determine that a generic version of a biologic is the same as the original product. With a chemical drug, this determination is very easy to do because it is simply a matter of chemical analysis. Biologic products are quite different in this regard. Without getting into the details, suffice it to say that the FDA has been working with industry on this issue for many years because, as you might imagine, both consumers and generic manufacturers want generic availability, but everyone also wants to be sure that the products are exactly what they should be. In June 2007, the Senate passed legislation dealing with the patent expiry issue mentioned by Dr. Heyman. It is therefore likely that generic biologic products may be available within the next few years.]

I encourage my patients to be very active and to be advocates. And if they explore these issues and feel that things are indeed unfair, they should be in touch with their legislators to say, “You know, we'd like it to be looked at again.” Biologics were brand new back in the early ‘90s, and now there are many biologics, not just for MS but for many other immune diseases and many cancers.

Trevis:
Many of our readers want to know about combination therapies and alternative dosing. Dr. Heyman, could you speak to that?

Dr. Heyman:
The combination therapies treat MS with a different approach in two different places of the immune system. So instead of using more and more Avonex, Betaseron or Rebif, they combine with it steroids, or methotrexate.

It makes sense, and these things should be looked at. The studies get a little more complicated, and the answer is probably going to be different for different people. The combinations right now don't have the data backing them as strongly as our ABCR drugs and Tysabri, but they are something that we do explore and we do use in practice.

Trevis:
I hear from several of the folks in the MS community that their doctors will not allow them on one therapy or another. Whose decision is it to switch a drug treatment?

Dr. Benedict:
I think the communication between the patient and their doctor is really critical. They need to have trust. And if they don't feel that they have that, they need to consider moving to a different physician.

It's a team decision because you have to remember what you're experiencing subjectively by the way of symptoms may not be the most important thing to be monitoring. You may not feel very good after you have an Avonex injection, or you may have a side effect to any one of the treatments, but what's really most important is the brain MRI scan and what's going on with objective measures of function.

Trevis:
Dr. Heyman, what is the timeline for that next wave of new MS drugs to hit the market?

Dr. Heyman:
The big timeline to me is in about three to four years. There are some very interesting agents, some of them oral, that are now recruiting for their studies, and most studies are about two years long. Presuming they get their patients involved, get everybody up and started, look at them for two years and look at the data for six months, in three years they will have some answers. Depending on those answers – both safety and effectiveness – they may decide to go to the FDA for approval. There are several agents that way.

Trevis:
Dr. Benedict, is there anything new and promising in treatments for cognition, depression and memory?

Dr. Benedict:
Last year, there was a paper published on the use of Aricept (donepezil), which is the most commonly used drug for Alzheimer's disease. This was used in MS and was found to be successful in improving memory function. The effect was not a huge effect, but it was statistically significant. Aricept is being used as a medication for some severe memory problems in MS patients. So that's one alternative.

We are also investigating the effects of stimulant medications for patients whose primary problems are slowness in processing information or attention problems. And one drug in particular – an amphetamine derivative – is showing to be quite promising.

Trevis:Our first question is coming in via e-mail from Brenda in Dallas. Brenda writes, "I recently had to stop my interferon therapy because I'm pregnant, and I'm not currently on any drug. Is there anything I can take for my MS while I am pregnant?" Dr. Heyman?

Dr. Heyman:There are things that can be done. One reassuring thing is that multiple sclerosis in general does better during pregnancy with a decrease in the exacerbation or attack rate. There’s not much change in the first trimester. But in the second trimester, the effects get fairly big. And by the third trimester, there's actually about an 80 percent decrease in exacerbation or attack rate. So during the pregnancy, many of my patients have told me, and many studies have verified, that symptoms are less. Not everyone, but some women say, “I felt normal again. It was great.”

But none of the FDA approved long term MS medicines are available during pregnancy. If someone's been on interferon and stopped, the effects don't wear off within a week or two, particularly if they've been on the medicine for a year or more. There may be some protective effects that last for more than a month even.

If someone requires therapy during pregnancy, neurologists may use the corticosteroid Solu-Medrol (methylprednisolone) sometimes. And if your disease has been particularly active, you would talk to your neurologist about a schedule of either Solu Medrol or for a non FDA approved indication, something called intravenous gamma globulin, or IVIG, which is safely used for other immune diseases during pregnancy. So there are options if necessary. For most people, they do not require or go on any of the therapies.

Trevis:I have an e-mail from Gail in Inglewood, California. She wants to know when it's possible that oral meds will replace those needles. I know you talked about that three year window, Dr. Heyman. Is that for oral drugs as well?

Dr. Heyman:Yes. Some of those studies are oral agents. So if we have the answer in three years, presumably in about four years they would be available, if the answers are good enough and satisfactory to the FDA.

Trevis:We have a question via e-mail from Anna Christina asks about mitoxantrone (Novantrone). It's administered every three months for a couple of years. And she says, "I'm on my fifth infusion. My neurologist decided to half the dose because the white blood cell count is dropping too low, and I'm also experiencing bladder symptoms." We didn't talk much about mitoxantrone, so could we talk a little bit about that one, doctor?

Dr. Heyman:Certainly, I think it's good to bring up the fact that there is another medicine out there that's not Tysabri (natalizumab) or one of the ABCR drugs. Mitoxantrone is also called Novantrone. It is now available generically [and is FDA-approved for use in MS]. It is a chemotherapy drug [i.e., it was originally developed as a cancer drug, and, in addition, it is not a biologic]. It is also used (FDA-approved) for leukemias, prostate and other cancers. But it's used much differently in MS. It is given every three months by an intravenous infusion. Side effect wise, it’s usually tolerable – some nausea. But the difficulty we have using a chemotherapeutic in many people with MS is that there are potentially bigger effects regarding fertility, pregnancy, fathering children, and there's a risk of cardiac (heart) muscle damage. And while we initially felt that was predictable [i.e., the heart damage], it's become a little less predictable. And it's something your neurologist will probably be watching pretty closely by doing periodic heart function tests. [Medical editor’s note: Because of the risk of heart damage, there is a lifetime limit on the total amount of Novantrone that one can receive even if no damage occurs during treatment.]

The other risk of Novantrone is leukemia. Neurologists have different opinions about what the risk of leukemia would be, I would say about one in 400.

[In summary,] it's got a higher level of risk, but in studies it was a pretty effective therapy with a big effect on exacerbations and solid effects on disability on MRI. But it was a much smaller study compared to the ABCR drugs and, particularly, compared to Tysabri. There were only about 60 patients in each treatment group. But the half dose in the study actually looked pretty good, and on a half a dose your risk of almost all the side effects is probably less.

Trevis:And you could probably stay on the drug longer because it has a maximum lifetime dose, not a maximum time on drug, is that correct?

Dr. Heyman:Yes. So if you can get by with a lower dose, I see that as a plus.

Trevis:This question is coming from Karen in Ballard, Washington, "If I have an exacerbation while on Tysabri, what treatment can be used to stop the exacerbation? Can IV (intravenous) steroids be used?"

Dr. Heyman:Yes. And that was done in the studies of Tysabri. We do have experience from the Tysabri studies that using the methylprednisolone (Solu Medrol) is something that was safely done in the study. The patients who had the PML (progressive multifocal leukoencephalopathy), the brain viral infection that we so seriously worry about with Tysabri, were patients who were on Avonex (interferon beta 1-a) with Tysabri. The patients who were on Tysabri alone, including some of them who did have steroids, were not found to have that infection. We're hopeful that we can safely do that.

And when I have patients on Tysabri who have attacks, I consider the steroids an option. But it doesn't work fully in everyone, and sometimes a neurologist might consider testing for antibodies to Tysabri as well.

Trevis:There's a question from Kingston, Massachusetts. Does switching medicines negate the previous medication's effect? Is there a limited time of effectiveness while taking one of the ABCR drugs? If I switch therapy, how long will it be before that new therapy helps me?"

Dr. Heyman:When it comes to switching medicines, I think it's appropriate for your neurologist and you both to decide if this is because it's not working well enough or because of side effects. If it's an interferon that's not working well enough, you'd want to know if you had antibodies against it or not. So if it's not working well enough because of MRI lesions, clinical disability progression or other factors, you put it on the back shelf for now, but you may find a different way to use the medicine in a particular patient later.

But I also discourage frequent changes because the medicines may take a little while to ramp up, particularly the Copaxone (glatiramer acetate) may take a little longer to get started. And you don't want to give up too quickly. So pick the medicine that you and your neurologist think will work and do your best to make it tolerable, control the side effects, and give it at least six months, if not a year, to decide if one's working or not working.

Trevis:Steve in Lansing, Michigan asks, "I just feel like I'm thinking slower, but I've had the neurologic tests, and there doesn't seem to be anything wrong. Is it possible that I'm just feeling like this is wrong?" Dr. Benedict?

Dr. Benedict:Is there any sign of this other than the feeling that he's slower? Is he having any difficulty with his job? Does anyone else notice this problem?

It could very well be that he's experiencing what's called cognitive fatigue. As he's going through the course of his day, and he's using his mind to do various tasks, he's feeling more tired than the average person, but he's actually able to perform as well as he needs to. He mentioned that he's had some neurologic tests. If those were neuropsychological tests and they were normal, then chances are that he can be pretty assured that he's in pretty good shape because neuropsychological testing has more false positive problems than the other way around.

Trevis:
We have a question from Shawnee, Kansas that says, "I've been reading that the contrast solution used in MRI is bad for you. Should I be concerned about getting an MRI once a year as my doctor recommends?"

Dr. Heyman:
Yes. There have been some reports, and it's fortunately not common. The MRI (magnetic resonance imaging) dye, or contrast as it's called, does appear to still be much safer than the CT (computed tomography) scan or the IVP (intravenous pyelogram) dye used for the other type of kidney scan. Particularly patients who may have renal or kidney problems, they may have a type of reaction that can involve the tissues underneath the skin, and there can also be kidney issues. And if someone has ever had a reaction, they should talk it over with their neurologist as well as the MRI center. Sometimes you don't use contrast, and we're looking at ways on MRI to avoid the expense and needle stick.

Trevis:
What exactly is that contrast dye doing, Dr. Heyman?

Dr. Heyman:
What we look at with the contrast dye is to see if the blood brain barrier is open. That same barrier that the cells sneak through to cause damage is where the gadolinium (the contrast agent) leaks through. So if we see that someone has contrast dye showing up in the brain, we presume that that's an area that has been recently or actively attacked, usually in the last two or three months and sometimes even just the last week or two. So it gives a neurologist an indication that there may be inflammation ongoing, or the disease is still active.

Trevis:
I have an e-mail question from Mary Pat in San Diego. She asks if there are any treatments for cognitive fatigue. And for those of us who don't know what that is, doctor, can you explain?

Dr. Benedict:
It's the fatigue that you experience working your mind hard rather than your body. And it's very common in MS for people to experience this. Sometimes it can actually affect cognitive functioning, although more often it doesn't. Nevertheless, it’s very unpleasant. Some of the medications that are used for this are also used to treat sleep disorders. And the most common one is Provigil, modafinil is the generic name. There's been a recent study looking at the effects of that medication on cognitive functioning, and there's a possibility that there might be some small effects that are beneficial there.

So I would recommend that this person talk to their doctor about trying Provigil (modafinil). If not Provigil, then amantadine (Symmetrel) is another commonly used medication for this. For some patients, it really helps a lot, for others, it doesn't have any effect at all and is a matter of careful experimentation.

Trevis:
So cognitive fatigue occurs because your brain is working so much harder to do what everybody else does normally?

Dr. Benedict:
Yes. When an MS patient is doing a task under FMRI – the Functional MRI machine is measuring how much of their brain is active – what we find is that the MS patient is able to do very often at least the same amount of work that the healthy individual is able to do, but they're using more of their brain to do that same task. And so the brain is working harder, hence that feeling of fatigue.

Trevis:
We have a caller on the line from Houston, Texas. Molly, you are on HealthTalk.

Molly:
I have had MS for many years, and I was wondering what they suggest for someone who was diagnosed way before any of the drugs came out.

Dr. Heyman:
It's a good question because many people have had MS long before any of these agents existed, and all the emphasis is on get on treatment early and stay on treatment. I like to determine if the disease is still active, and there are different measures of that. And certainly, we look at how the exam is changing. Have there been clear-cut exacerbations that weren't related to infection or heat or overuse?

Many neurologists feel that if the MRI shows new lesions showing up or new enhancing lesions, it means there's a lot of inflammation going on, and it may be worthwhile to get started on one of these medicines. Whereas, if somebody has changed very little over 10, 15 or 20 years and the MRI's not changing, I might concentrate on healthy lifestyle and exercise and try to get this disease or spasticity or bladder under better control. A worthwhile question to ask your neurologist is, “What's the payoff likely to be for me if I go on one of these medicines?” And no one has the crystal ball, but I think the factors of new attacks, how quickly you're worsening or changing and MRI inflammation are all things that help predict that it's going to be more worthwhile to do one of the ABCR drugs or Tysabri.

Trevis:
We've got a question from Debbie in Pennsylvania, “Can activities like crossword puzzles or other memory or intellectual games help keep our cognitive abilities from deteriorating as quickly?”

Dr. Benedict:
The answer isn't known definitely. But given what we know about what's going on in the brain with functional imaging studies, the degree to which the brain has potential for restoration, I would say yes. It doesn't matter so much what the person is doing, as long as they are trying to learn more information and challenge themselves intellectually. If they like doing crossword puzzles, then great, do the crossword puzzles. But if they don't like doing crossword puzzles, then don't do the crossword puzzles. You needn't sign up for a fad like program in order to exercise your brain. Reading a book and trying to remember what you read is good enough.

We have found that the normally aging brain is more plastic than we once thought, and consequently seniors are being encouraged to do things like this.

Trevis:
Barbara in New York is asks, "How long must I be off my interferon drug before switching and starting Tysabri?"

Dr. Heyman:
There is no absolute rule. Some neurologists are conservative and require up to three months. Others may be off only a week or more. Some of the variables to talk about with your neurologist are if you've had prior infections or if you're running a lower white blood count because of your interferon. There are other variables that come into play, but no one has a certain answer. I'm less inclined to wait, particularly if someone is getting worse quickly. If it’s someone who is very cautious about things and worried, I may wait longer.

Trevis:
Mike from Seattle e-mailed our final question for the night, "Why do I have more MS symptoms in the summer? Is there some sort of correlation between heat and exacerbations, or are they pseudoexacerbations?" Dr. Heyman?

Dr. Heyman:
Typically, neurologists think of pseudoexacerbations when the heat or humidity is higher, and people's core temperature runs a little bit higher. People tend to be more physically active in the summer, so they may notice their deficits more than in the winter when they're hunkered down with that good book. When people get out and about, sometimes they do pick up more coughs, colds and infections too. We do tend to see some peaks of exacerbations, but I find that's more often spring and fall, just about the time other infections are going around. Infections, besides causing the pseudoexacerbations, can be trigger for real infections too. You do what you can, and that's usually avoiding the crowds of people who are sneezing and coughing and hand washing.

Trevis:
Do cooling vests help? Does cooling the body externally help at all in the summertime?

Dr. Heyman:
For many people, they do help. And the cooling vests have come way down in price and in weight. And it's something that's a nice non pill thing to do. Try a cooling vest. A nice cold beverage will lower your core temperature. And if you notice the vision becomes better, you've got a nice easy treatment that you can share with your family members.

Trevis:
Dr. Benedict, are there any final thoughts with which you'd like to leave our audience?

Dr. Benedict:
The take home message is that most or nearly all patients with MS will have some problem with depression or cognitive function during the course of their illness. That's a normal thing to experience. It's important to be open with your doctor about what's happening and to explore with him possible medications that might give you some symptomatic relief.

Trevis:
And, Dr. Heyman?

Dr. Heyman:
Find a medicine that helps get your MS under control. Medicines are one aspect, but also find a way to live better and enjoy life more.

Trevis:
Well, my heartfelt thanks to both our panelists for your expertise. From all of us at the studios in Washington and all of the HealthTalk MS Education Network, I'm Trevis Gleason. We wish you and your families the best of health. Cheers.

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